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I almost wish stuff like this had something like a content warning. Reading this made me quite sad.
You poor thing. Drink your warm milk and go back to sleep.
Man that ending was very brunt. I did not expect to just see "he died a few months later" as a footnote at the end.
Not even a few months. Less than 2. 55 days to be exact. That was fucking brutal.
Yeah, that knocked me for six.
This story is in the same vein as that of the CloudFlare cofounder[1] who suffers from a rare neurodegenerative disease and has had his life pretty much taken from him at far too young an age.

This quote in particular gnaws at me: "We had promised each other that in a few years, when the girls headed off to college, we’d work less and travel more. Amy didn’t deserve to lose those dreams, or her companion, just as we were on the brink." I, presumably like many others here, have spent a lot of time on my career, perhaps to the detriment of other aspects of my life. Is it worth it? That seems like an impossible question to answer.

[1]: https://www.wired.com/story/lee-holloway-devastating-decline...

My attitude to stories like this is simply that you can't live under the assumption that you'll die early from some freak cause. It would be a non-functional state of life, sacrificing all long term objectives.

At the end of the day all any of us can do is play the odds, and sometimes while playing X-Com that 99% chance-to-hit point blank shot by your most experienced soldier with the best equipment simply misses.

> It would be a non-functional state of life, sacrificing all long term objectives.

If your long-term objectives mean sacrificing (or delaying) happiness in the now, then I think you're doing the wrong thing.

It's all well and good to have long-term objectives, and we all hope we beat our life expectancy numbers, but you have to make every effort to be happy now, and not wait for some distant and uncertain future that may or may not become reality.

A key detail here is you can't predict the future. We can all imagine situations where the long term bet pays better. We can even make that sort of prediction in a way that works a good amount of the time, even most of the time. Except sometimes it won't work out. We don't know in advance when that sometimes will be. Be prepared for either outcome I guess.
> Be prepared for either outcome I guess.

Yes, exactly.

Happiness now (because now is guaranteed) and (hopefully) happiness later too.

But whatever you do, don't put off happiness now.

Sacrificing present happiness for the future is the definition of a long term goal. Today I sacrificed alcohol I would have enjoyed so as to continue losing weight. If I thought I wouldn't be alive months from now to experience the benefits from said weight loss, why do it? Ironically that attitude would actually increase the odds of early-onset nastiness.

Why put money into my 401k that I can't touch without penalty for 40 years when I could enjoy it now?

Being content and at peace with oneself in the moment is possible, and should be striven for. But for my part I'd have a hard time being content with myself if I wasn't striving for better for both myself and my family.

In my experience the only lasting satisfaction in life comes from discharging meaningful responsibilities, that requires some sacrifice of momentary happiness. Happiness is great when it's around but has no staying power, and too many people get sucked into miserable hedonism while trying to turn it into a constant.

Providing for an assumed future requires sacrifice and is the right bet. While doing that, understand that the journey is the destination. It's a tall order but somewhere in there is the answer to a lot of life's questions.
> Sacrificing present happiness for the future is the definition of a long term goal.

> Today I sacrificed alcohol I would have enjoyed

It does not mean you have sacrificed happiness. You can (I hope) be happy without drinking.

It is common to have a rare disease: 7-8% of the general population has some sort of a condition that is classifiable as a rare disease

I personally have 2, both of which affect my peripheral nervous system.

Getting diagnosed is basically like having a bomb dropped on you. Nothing can prepare you for it, and it takes a long time to heal from the news, if you ever do.

The vast majority of rare diseases have no government health regulatory system approved treatment. I believe 95% do not.

Treatment is often for symptom relief, and typically modification of the disease process itself is not possible. However, in some cases, drugs can be repurposed.

Such a difficult question. My thoughts: we're all trying to strike a balance between work and family. Whatever balance you manage, be present wherever you are. For whatever time you are with your family put away your phone, and be present mentally. Your children will be thrilled if they get 30 minutes a day of you uninterrupted even if you are working much of the rest of the time.
I remember this article when it first came out. It was like a gut punch. Things like this are so scary and you can do everything right and still die early. When I read he died a few months later it was just horrible to me. I still think about this story often and it scared me to my core that I could have undiagnosed cancer and be dead in months.
Same. Why I am against the idea of ever having a family unless I have a fuck you pile of cash. At least that way, you won't have many regrets and you should be able to hire someone to take care of things that you won't live to. It won't be 100% same as when you were there but at least, it won't be the worst.

Death isn't as scary as the idea of leaving someone dependent on you behind. They might become dysfunctional without you.

Life insurance can be very reasonably priced.
Yeah, you are right. Though, you stil require high income to go for higher plans (at least here). My aim would be for my family to live a luxurious life without having to work again. That requires more than life insurance money.
At any of the big corporate jobs I've held, it's been pretty easy to get life insurance for 8x my yearly salary

I think my wife could take 8 years of Silicon Valley salary and retire off it in a lower cost of living area, although you're right that it wouldn't be a luxurious monetary worry-free existence..

One of my previous bosses and then my client for +10 years, have cancer and is very close to the end. He also spent his life in work and also have regrets. He was fit and healthy, at his peak in life and then have it all taken away. Cancer sucks do damn much..
I'm going to go out on a limb and request that people not post this sort of thing here. HNers, I believe, have a higher-than-average rate of anxiety and psychosomaticism (myself included). Articles like this that don't include any real hopeful message or interesting takeaway just cause pointless distress for many of us.
On the other hand, many people on HN just like most likely pretty much every human you meet needs to hear something like this in the end blurb:

> If I get a soapbox, here’s my short shtick: We are all so fragile. Each day is precious. And the most important parts of our lives are the relationships we invest in.

Carpe diem! Do something nice for your loved ones. Make friends with someone you dislike. Go be good to somebody who doesn't deserve it. Our time here is limited, there's little space to be petty.

I doubt there's anyone in our society who hasn't heard that adage at one point or another. Not that it isn't meaningful, but I don't think hearing it repeated again justifies the toll on mental health that comes with it in this instance.
I assure you, I've heard it (and said) it tens of thousands of times in my life.

Looking back, I didn't even know what it meant until I lost my Mum a year ago at age 67 to cancer.

Life is damn short, and the most important thing you can do is have happiness right now.

I suspect what you may be describing is that it doesn't resonate with everybody all the time. But I think it's pretty common for some life experience to hit hard and someone realizes that all the corny, hackneyed cliches, as silly and overly simple as they seemed, basically had something to it. Then it clicks.

But I am sorry to hear about the toll on mental health.

Respectfully, it might be worth considering how people have a plurality or reactions to content. This content is obviously distressing and could have used some sort of warning.

Not everyone thinks or responds the same and it is good to be conscious of that.

I feel like the title of this one sufficiently conveys the kind of content you can expect. If you know this is a problem for you, you aren't required to read it. There will not be a test. The mods will not email you and inquire as to why you failed to comment on this particular article.

When I first joined, I was extremely ill and I turned off Show Dead because it just upset the hell out of me to see dead comments and dead articles. And I knew it was because I was so very sick and that made me emotionally fragile.

As I got healthier, that stopped bothering me and I turned on Show Dead because it's additional information and it's useful for knowing what is going on here.

I'm prone to nitpicking titles and I don't have any problem with people nitpicking titles because they feel the title didn't adequately signal that is wasn't really the kind of content they come here for. But I think it's overkill to ask people to not submit this kind of content.

The title implies that we're reading someone writing on their struggle with death, not the last published words of a dying man, insisting that he will fight a disease and try to beat the odds, punctuated by the editors note that he died days writing after the article.

I'm sorry but I think that is deserving of a more explicit content warning, and I don't see what that would cost you or others.

Agreed. This should have a content warning.

But the micro targeting facilitated via big data on social media, which plays in to our hopes and fears, desensitizes us.

I have 2 rare diseases myself, so I am pretty numb to articles like these, which is terrible, in and of itself.

My closing paragraph:

I'm prone to nitpicking titles and I don't have any problem with people nitpicking titles because they feel the title didn't adequately signal that is wasn't really the kind of content they come here for. But I think it's overkill to ask people to not submit this kind of content.

On the contrary, articles like this remind me to not take life for granted.

Ever since I read about Lee Holloway at Cloudflare I try to be grateful for every day on this Earth. I am 30 and yet so many promising and beloved people have died before my own young age.

We will all die. I am lucky to still be here experiencing this life.

When I was in college I put off a lot of things, because I was waiting to get out into the 'real world'. Which when I got out into the 'real world' realized was just stupid. Life is as you live it. It's all the real world.
Yeah, I was kind of waiting for the ‘I beat the odds’ message. Only to find that it wasn’t there...
Sometimes it's not and that should be a wake up call that life doesn't always turn out for the best like we always hope it would.
By definition, most people don't beat the odds...
True, but generally stories aren’t written about those people.
Maybe articles like these are what some people need to be reminded that life isn't all about coding.
If you or anyone else want to talk, email is in the profile.

On anxious thoughts, I find rationalising them is a better way to cope than trying to distract. Write them down somewhere and go through each labelling the possibility.

I couldn't disagree more. The idea of denying the HN community an opportunity to read a touching and deeply personal story—simply because its ending isn't palatable to you—is incredibly selfish.
As a child at one stage of my life I was terrified of dying, and every time I learned about a new way to die, I became certain I was in the process of dying in exactly that way.

Then as I learned more about science and statistics I realized that most early deaths are rare, and not only that but evolution guarantees they are rare, because we all descend from people who made it long enough to raise a family.

Of course rare doesn't mean impossible, and if you are truly sick see a doctor ASAP, but otherwise remember you're just an experimental branch on the great tree of Life and enjoy your time in the sun. We all have our time in the light, and we all return to the earth when that time is up.

The article was brutal. I think Wired should have put a warning at the beginning of the article, instead of the very end, but; do you really think censoring yourself from all harsh reality and expecting "disney" endings for everything is wise? Should every article contain a hopeful message with mandatory rose colored glasses? Should survivorship bias echoing be enforced? Zealous positivity can prevent you from somber reflection, asking difficult questions, and growing as a person overall. I don't think its wise to dwell on negative realities like the information technology fueled Muslim concentration camps in China or the relative slave labor that manufactures your electronics and clothing or the cows and chickens that get brutally slaughtered so that you can eat meat and make necessary protein chains; but, hey, I enjoy my steak and my smartphone and just keep rolling baby! That's life.
> Zealous positivity can prevent you from somber reflection, asking difficult questions, and growing as a person overall.

Well said. This advice is something I try to follow more as I get older.

Dwelling on negative realities is a bit more challenging especially with the current events.

> Dwelling on negative realities is a bit more challenging especially with the current events.

It is. The numbers are staggering and our federal mismanagement of it is horrifying. In response, I have cast myself into a dev hole, am building a large-scale dream project, and i am very thankful to have the extra time.

> the cows and chickens that get brutally slaughtered so that you can eat meat and make necessary protein chains;

This one is solvable - you can either just don't eat meat (plenty of people don't eat meat and they seem to do fine) or eeat meat from animals which were treated humanely.

You're making a lot of incorrect assumptions about my worldview, and I don't appreciate it.

No matter how grounded one's perspective is, each person has a finite amount of emotional energy to spend at a given time. This is a universal truth. Articles like this one can trash one's energy reserves - causing distress - without introducing any meaningful new information or perspective whatsoever. It's simply a bad cost/benefit ratio. I didn't learn any new hard truths by reading it, and I don't need your assistance to consider all of the bad things in the world, thank you very much. What I have trouble with is ceasing to do that even for a brief moment.

Don't preach at someone you don't have the faintest understanding of.

Yeah, there absolutely should be a content warning on this article. It is the right thing to do. However, social media plays similar, more damaging and more insidious psychological tricks. Big data makes it more personalized and damaging. I think many have become desensitized to the harms micro targeting on our hopes and fears has done, via social media in particular. Hence, the lack of concern and sensitivity for the need of a content warning.
I am not in favor of censorship. I am not in favor of those in favor of censorship. Good luck with your issues.
So it was weird when my primary care doctor put me on a cocktail of pain killers, nerve blockers, and cortisone shots. I even tried acupuncture. But as my back began to improve in late June, I started to feel off. Sick to my stomach. Weak. Couldn’t sleep. I lost more than 10 pounds. [...] My doctor said I was fit and healthy and that there was no need to run any blood tests. He wondered aloud if this was all in my head.

It never stops shocking me how different the American health care system is...

It's really not exclusive to America.
The figures say otherwise [1]

"Americans are prescribed six times more opioids per capita than citizens in France, despite nationalized medicine in France allowing for easier access to healthcare and more healthcare visits per capita"

[1] https://www.dentalcare.com/en-us/professional-education/ce-c...

Ah well I thought the main point of that excerpt was that they didn't run blood tests and find the cancer sooner. Not the overprescription of medication.
Well, based on my experience in the UK and Australia. We get blood tests on pretty much any occasion when we're unwell before we're subscribed to an array of opiates.

Shit, I had my wisdom teeth taken out days ago and the dentist was apprehensive to give me anything stronger than ibuprofen and paracetamol.

Unfortunately, I think you're mistaken.

Anecdotally, my experience with the American healthcare system is the exact opposite of OP’s. I went through a bout of months of intense pain, seeing 7+ doctors. Each of them insisted on running (and re-running) blood test after blood test, even repeating blood tests that had already been done only days prior. In the end I had over 100 different blood tests done and the only thing ever prescribed was some heartburn medication.

Other times, my primary doctor always insists on doing blood tests before anything else. The only time I’ve been to him and been prescribed something before getting a blood test was when I went in for a muscle sprain, and even then the prescription was for some pretty mild muscle relaxers. I’ve also had the pleasure of experiencing kidney stones, and even when in the ER for that the doctors were extremely hesitant to give me anything stronger than ibuprofen until they did multiple blood tests and imaging to confirm without a doubt that the opiates were necessary.

I know statistics say otherwise, but I too am always surprised to hear stories about American doctors handing out opiates like candy.

Funny that you mention UK and blood tests. I was literally told I don't need one, so I went private for £100. I was right about something being wrong, too. Really can't generalize for the whole of UK, though, some parts are so deprived they might as well have no healthcare.
Yeah, absolutely. There's anecdotes almost for any situation proving a health care to be awful and great. My comment is mostly around the current opioid crisis in the United States of which there's an alarming amount of data to support.

Australia also had, or more likely has quite the crisis too. This is not at all specific to the United States though, I use it as an example as it's demonstratively worse.

In the last few years in Australia, opiates in it's over-the-counter (non-MD prescribed) forms have become controlled and are no longer available over the counter.

https://www.addictioncenter.com/addiction/addiction-in-austr...

https://www1.racgp.org.au/newsgp/clinical/australia-s-overdo...

Specifically regarding codeine:

https://www1.racgp.org.au/newsgp/clinical/here-s-what-happen...

Pancreatic cancer is almost always asymptomatic, until far too late for anything but palliative treatment. And it's extremely coagulogenic, so clots are often the initial symptom.
Why not test everyone then?
I've wondered that myself. And for myself.

I gather that it does take several years to go from early cancer cells to a tumor that's visible by MRI. But once there's a visible tumor, progression is much faster. And by the time you're clotting up and experiencing GI symptoms, you already have multiple metastases.

But there's no specific blood test, as far as I know. So basically you'd need an annual MRI scan, I suspect. I guess that'd cost too much. Or maybe damage from the x-ray exposures would overall increase risk.

No X-ray radiation from MRI - I’d bet it’s the cost thing.
Two reasons.

False positives and the medical interventions that result aren't without risk.

Some cancers are just a death sentence. They start out virulent and spread quickly. And are immune to treatment. Detecting them early buys you nothing.

Flip side is some cancers progress slowly. Screening tends to catch the slow indolent cancers and miss the nasty ones. But because they progress slowly catching them early may provide not much benefit.

> My doctor said I was fit and healthy and that there was no need to run any blood tests. He wondered aloud if this was all in my head.

I'm seeing a different doctor.

Is everyone going to think this - or should the next step in this situation be that every Doctor should recommend that you get a second or third opinion? Without processes in place, we will continue to make the same errors.
Do we just never hear the other side (because there's too many of them and they're too poor to get published)?

There's a lot of people who say their parents wished they "left a mark" or did something in this world besides enjoying living.

My uncle died of cancer, it took all of 8 months (he likely had it for a while by the time they found it). It was horrible for him.

By now, I have about 5 people I knew who just died suddenly or very fast, including one who killed themselves. Life is short and unfair, there's no time for negative emotions like hate, feeling sorry for yourself, regretting stuff imo. Just enjoy whatever life you have.

sad.

isn't it weird this guy was more concerned about his company than talking to his mom?

also westerners get a lot of cancer, I think it's all the shit they eat. he exercised so much it didn't help him

I didn't see the "(2017)" when reading this and wasn't aware of the news at the time, so at the end I wondered about how things concluded.

Unfortunately Matt passed in 2017 [1] [2] and the company reportedly acquired by Uber in 2019 [3] [4].

My take-away from this is to not waste the precious time we may or may not have, to not have regrets, to have my friends and family know how much they mean to me.

A side note: It's a shame that the record of his death by his company only exists through a web archive link. It feels like the passing of a person should be more permanently recorded. It's a single marker that says "this person existed and they mattered". Of course this means a lot to those who knew him directly, but it also means a lot to those in the future trying to understand their family history or the history of our society.

For example, the people who were killed during the witch trials - although their deaths were tragic, at least there is some recording of the injustice done against them [5].

[1] https://www.geekwire.com/2017/mighty-ai-co-founder-matt-benc...

[2] https://web.archive.org/web/20171020053826/https://mty.ai/bl...

[3] https://mty.ai/

[4] https://www.geekwire.com/2019/uber-acquires-seattle-startup-...

[5] http://www.witchtrials.co.uk/

My doctor ... wondered aloud if this was all in my head.

Just as a PSA: This is all too common with obscure conditions.

Before I finally got a proper diagsnosis, I spent months on antibiotics with doctors unsure what to do and when I expressed my concern with them having no answers and being unable to fix me that this could kill me, I was asked if I wanted to speak with a psychiatrist.

I wish medical doctors would be trained to never, ever dismiss anything as "all in your head."

On the other hand, there are people for whom it is in their head, but cost considerable (and scarce) medical resources having it investigated and treated. It's a balancing act.
There is a difference between concluding that someone may need to see a mental health professional to check out that angle and acting like someone is a nutter for being concerned that the failure of doctors to pinpoint the problem might actually prove deadly. One is about getting actual answers. The other is about blowing off the patient, being dismissive and belittling legitimate concerns and it routinely proves deadly.

In my experience and from everything I have read, the latter is far too common. It is much more common than the former.

Doctors being wrong is more common than hypochondriacs and overuse of the medical system?

I guess we'll just agree to disagree.

Doctors being dismissive, especially towards women and people of color, is excessively common. It's easily googled and it contributes to high mortality in some populations.

Here is just one such article:

https://www.oprahmag.com/life/health/a23100351/racial-bias-i...

I'm a woman and was called a hypochondriac until I got the right diagnosis at age 35. I'm skeptical that hypochondria is as common as people seem to think. I think people with real problems that aren't easily identified and being dismissed is probably far more common that actual psychosomatic illness. Probably somatopsychic illness is the real explanation in many of those cases.

The length of one's life is uncertain.

Death is certain.

The Buddha recommended that both lay and monastic followers perform the following recollections on a daily basis:

1. I am sure to become old; I cannot avoid ageing.

2. I am sure to become ill; I cannot avoid illness.

3. I am sure to die; I cannot avoid death.

4. I must be separated and parted from all that is dear and beloved to me.

5. I am the owner of my actions, heir of my actions. Whatever actions I do, good or bad, of these I shall become the heir.

The first four recollections require no faith and can be perceived in the here and now.

I find that regularly contemplating the above recollections are helpful in reminding me of my own mortality.

They also prompt me to question my direction in life and what I'm working on. It's often easier to make frequent but smaller course corrections than really big changes.

With all that said, I still find myself falling into the illusion that I can control what happens in my life and that I'm building something permanent. We can certainly influence aspects of our lives, but at the end of the day it's all impermanent, beyond our absolute control, and will pass away.

Much like others I found the no blood test thing wild.

Personally I've just resorted to doing annual blood test in a 3rd world country. There the doctors will run whatever you like basically - it's paid at commercial (3rd world) rates so they don't give AF.

Ironically in a "european" healthcare system the doctors are much more reluctant given that they need to fairly allocate public funds.

The gut punch that keeps on punching...

A bit of web searching yields:

YouTube video from Matt's family and friends about Matt Bencke: https://www.youtube.com/watch?v=AbgVvCnvrAk

Matt's wife and friends post to https://www.facebook.com/groups/benckeupdates/ (most content viewable w/o login)

Here's a covid19-related post - https://www.facebook.com/groups/benckeupdates/permalink/6501...

One sad thing is that the domain registration for Matt's personal website has expired. So the web has recycled the website a couple of times.

Now the website content is NSFW. :(

I laughingly went into the cardiac clinic to have a routine angiogram that wouldn't find anything. I even made a play on my surname that I was going to have a "strangiogram".

A bit later, the doctors said "We're not sure if we'll let you go home or not."

I had plaques closing off my main cardiac artery just where it branches. If I got a full blockage there it would be curtains immediately, with no chance whatever.

Stents were no good, if they put a stent in one arm of the fork it would close off the other and vice-versa.

I was literally a walking time-bomb. They eventually said I could go home. Two weeks later I had a triple bypass.